Psychological Adaptation to Serious Illness: A Qualitative Study of Culturally Diverse Patients With Advanced Chronic Kidney Disease.
Ontology highlight
ABSTRACT: Context
Psychological distress is associated with adverse health outcomes in serious illness and magnified among patients of low socioeconomic status. Aspects of one's culture, such as religion and spirituality, can influence these patients' coping response to distress. Advanced chronic kidney disease (CKD) is a serious illness that disproportionately affects patients of low socioeconomic status, but a theory-based understanding of this group's lived experience of CKD is lacking.Objectives
We explored the cognitions, emotions, and coping behaviors of patients with CKD with emphasis on those of low socioeconomic status. We further inquired into any influences of religion or spirituality.Methods
We interviewed 50 English-speaking or Spanish-speaking adults with advanced CKD from three medical centers in Nashville, Tennessee. Analyses occurred with isolation of themes; development of a coding system; and creation of a conceptual framework using an inductive-deductive approach.Results
Median age was 65 years; median annual income was $17,500 per year; and 48% of participants had not progressed beyond high school. Key beliefs (awareness of mortality and lack of control) influenced patients' emotions (existential distress in the form of death anxiety, prognostic uncertainty, and hopelessness) and coping behaviors (acceptance, avoidance, emotion regulation via spirituality, and seeking socialsupport via a religious community).Conclusion
Individuals with advanced CKD and low socioeconomic status lack control over disease progression, experience death anxiety and existential distress, and emphasize spirituality to cope. Our study identifies novel components for a psychotherapeutic intervention for patients with advanced CKD at high risk for adverse health outcomes.
SUBMITTER: Nair D
PROVIDER: S-EPMC7770006 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackgroundTo date, limited research has been dedicated to exploring the experience of decision-making for chronic kidney disease (CKD) patients who have initiated dialysis and have to make decisions in the context of managing multiple illnesses. Evidence about the experience of decision-making for minority or disadvantaged groups living with CKD (e.g. culturally and linguistically diverse adults; those with lower health literacy or cognitive impairment) is also lacking. This study aimed to explore the experience of healthcare decision-making among culturally and linguistically diverse adults receiving in-centre haemodialysis for advanced CKD.MethodsSemi-structured interviews with English or Arabic-speaking adults recruited from four large haemodialysis units in Greater Western Sydney, Australia using stratified, purposive sampling. Interviews were audio-recorded, transcribed verbatim, and analysed using the Framework method.ResultsInterviews were conducted with 35 participants from a range of cultural backgrounds (26 English-language; 9 Arabic-language). One quarter had limited health literacy as assessed by the Single Item Literacy Screener. Four major themes were identified from the data, highlighting that participants had limited awareness of decision-points throughout the CKD trajectory (other than the decision to initiate dialysis), expressed passivity regarding their involvement in healthcare decisions, and reported inconsistent information provision within and across dialysis units. There was diversity within cultural and linguistic groups in terms of preferences and beliefs regarding religiosity, decision-making and internalised prototypical cultural values.ConclusionWithout sustained effort, adults living with CKD may be uninformed about decision points throughout the CKD trajectory and/or unengaged in the process of making decisions. While culture may be an important component of people's lives, cultural assumptions may oversimplify the diverse individual differences that exist within cultural groups.
| S-EPMC6258454 | biostudies-literature
Project description:In Canada, people from culturally and linguistically diverse (CALD) backgrounds are at a greater risk of developing a chronic illness, and are more likely to experience adverse health effects and challenges in accessing high-quality care compared with Canadian-born individuals. This, in part, has been attributed to having inadequate access to information and resources needed to manage their illness(es). A qualitative descriptive design and inductive content analysis were used to explore the information needs of 24 CALD patients with chronic illnesses. Participants identified medical, lifestyle, and psychosocial information needs. How much information was needed depended on such antecedents as illness trajectory, severity, and perception. Most information needs remained unmet. A number of communication strategies were identified to bridge language barriers that go beyond translation and are based on effective health education strategies. Findings can help health care professionals better identify CALD patients' information needs and provide strategies that go beyond translation.
| S-EPMC9207989 | biostudies-literature
Project description:ObjectiveCommunication about patients' values, goals, and prognosis in serious illness (serious illness communication) is a cornerstone of person-centered care yet difficult to implement in practice. As part of Serious Illness Care Program implementation in five health systems, we studied the clinical culture-related factors that supported or impeded improvement in serious illness conversations.MethodsQualitative analysis of semi-structured interviews of clinical leaders, implementation teams, and frontline champions.ResultsWe completed 30 interviews across palliative care, oncology, primary care, and hospital medicine. Participants identified four culture-related domains that influenced serious illness communication improvement: (1) clinical paradigms; (2) interprofessional empowerment; (3) perceived conversation impact; (4) practice norms. Changes in clinicians' beliefs, attitudes, and behaviors in these domains supported values and goals conversations, including: shifting paradigms about serious illness communication from 'end-of-life planning' to 'knowing and honoring what matters most to patients;' improvements in psychological safety that empowered advanced practice clinicians, nurses and social workers to take expanded roles; experiencing benefits of earlier values and goals conversations; shifting from avoidant norms to integration norms in which earlier serious illness discussions became part of routine processes. Culture-related inhibitors included: beliefs that conversations are about dying or withdrawing care; attitudes that serious illness communication is the physician's job; discomfort managing emotions; lack of reliable processes.ConclusionsAspects of clinical culture, such as paradigms about serious illness communication and inter-professional empowerment, are linked to successful adoption of serious illness communication. Further research is warranted to identify effective strategies to enhance clinical culture and drive clinician practice change.
| S-EPMC10362669 | biostudies-literature
Project description:BACKGROUND:Patient-centered care for older adults with CKD requires communication about patient's values, goals of care, and treatment preferences. Eliciting this information requires tools that patients understand and that enable effective communication about their care preferences. METHODS:Nephrology clinic patients age ?60 years with stage 4 or 5 nondialysis-dependent CKD selected one of four responses to the question, "If you had a serious illness, what would be important to you?" Condensed versions of the options were, "Live as long as possible;" "Try treatments, but do not suffer;" "Focus on comfort;" or "Unsure." Patients also completed a validated health outcome prioritization tool and an instrument determining the acceptability of end-of-life scenarios. Patient responses to the three tools were compared. RESULTS:Of the 382 participants, 35% (n=134) selected "Try treatments, but do not suffer;" 33% (n=126) chose "Focus on comfort;" 20% (n=75) opted for "Live as long as possible;" and 12% (n=47) selected "Unsure." Answers were associated with patients' first health outcome priority and acceptability of end-of-life scenarios. One third of patients with a preference to "Focus on comfort" reported that a life on dialysis would not be worth living compared with 5% of those who chose "Live as long as possible" (P<0.001). About 90% of patients agreed to share their preferences with their providers. CONCLUSIONS:Older adults with advanced CKD have diverse treatment preferences and want to share them. A single treatment preference question correlated well with longer, validated health preference tools and may provide a point of entry for discussions about patient's treatment goals.
| S-EPMC6830783 | biostudies-literature
Project description:Cardiovascular disease is a primary contributor to premature death among people with serious mental illness (SMI). This study used baseline data (N=314) from an effectiveness trial testing a healthy lifestyle intervention for racial/ethnically diverse participants with overweight/obesity and SMI living in supportive housing. We examined the prevalence and correlates of a modified version of the American Heart Association (AHA) metric of ideal cardiovascular health (ICVH). Five AHA ICVH metrics (smoking, body mass index, diet, physical activity, and blood pressure) were used to create a composite ICVH score. The mean ICVH score was 3.15 (range 0-8). Multivariate analysis indicated that higher ICVH scores were associated with lifetime cancer diagnosis and better cardiorespiratory fitness. Lower scores were associated with female gender, racial/ethnic minority status, and antipsychotic use, suggesting that these subgroups of people with SMI may benefit from targeted screening and interventions to improve their cardiovascular health.
| S-EPMC7794399 | biostudies-literature
Project description:ImportanceDiscussions about goals of care with patients who are seriously ill typically occur infrequently and late in the illness trajectory, are of low quality, and focus narrowly on the patient's resuscitation preferences (ie, code status), risking provision of care that is inconsistent with patients' values. The Serious Illness Care Program (SICP) is a multifaceted communication intervention that builds capacity for clinicians to have earlier, more frequent, and more person-centered conversations.ObjectiveTo explore clinicians' experiences with the SICP 1 year after implementation.Design, setting, and participantsThis qualitative study was conducted at 2 tertiary care hospitals in Canada. The SICP was implemented at Hamilton General Hospital (Hamilton, Ontario) from March 1, 2017, to January 19, 2018, and at Foothills Medical Centre (Calgary, Alberta) from March 1, 2018, to December 31, 2020. A total of 45 clinicians were invited to participate in the study, and 23 clinicians (51.1%) were enrolled and interviewed. Semistructured interviews of clinicians were conducted between August 2018 and May 2019. Content analysis was used to evaluate information obtained from these interviews between May 2019 and May 2020.ExposuresThe SICP includes clinician training, communication tools, and processes for system change.Main outcomes and measuresClinicians' experiences with and perceptions of the SICP.ResultsAmong 23 clinicians interviewed, 15 (65.2%) were women. The mean (SD) number of years in practice was 14.6 (9.1) at the Hamilton site and 12.0 (6.9) at the Calgary site. Participants included 19 general internists, 3 nurse practitioners, and 1 social worker. The 3 main themes were the ways in which the SICP (1) supported changes in clinician behavior, (2) shifted the focus of goals-of-care conversations beyond discussion of code status, and (3) influenced clinicians personally and professionally. Changes in clinician behavior were supported by having a unit champion, interprofessional engagement, access to copies of the Serious Illness Conversation Guide, and documentation in the electronic medical record. Elements of the program, especially the Serious Illness Conversation Guide, shifted the focus of goals-of-care conversations beyond discussion of code status and influenced clinicians on personal and professional levels. Concerns with the program included finding time to have conversations, building transient relationships, and limiting conversation fluidity.Conclusions and relevanceIn this qualitative study, hospital clinicians described components of the SICP as supporting changes in their behavior and facilitating meaningful patient interactions that shifted the focus of goals-of-care conversations beyond discussion of code status. The perceived benefits of SICP implementation stimulated uptake within the medical units. These findings suggest that the SICP may prompt hospital culture changes in goals-of-care dialogue with patients and the care of hospitalized patients with serious illness.
| S-EPMC8374609 | biostudies-literature
Project description:ImportancePopulation-based data are needed to inform the safe prescribing of fluoroquinolone antibiotics to patients with advanced chronic kidney disease (CKD).ObjectiveTo quantify the 14-day risk of a hospital visit with nervous system and/or psychiatric disorders, hypoglycemia, or a collagen-associated event in patients with advanced CKD newly prescribed a fluoroquinolone at a higher vs a lower dose.Design, setting, and participantsThis population-based cohort study in Ontario, Canada (January 1, 2008, to March 17, 2020) used linked health care data to identify new users of fluoroquinolone antibiotics. Participants included adults 66 years or older with advanced CKD (an estimated glomerular filtration rate [eGFR] <30 mL/min/1.73 m2 but not receiving dialysis). Data analysis was performed from January 1 to April 30, 2021.ExposuresA new prescription for a higher-dose fluoroquinolone (ciprofloxacin, 501-1000 mg/d; levofloxacin, 501-750 mg/d; or norfloxacin, 401-800 mg/d) vs a lower-dose fluoroquinolone (ciprofloxacin, 500 mg/d; levofloxacin, 250-500 mg/d; or norfloxacin, 400 mg/d).Main outcomes and measureThe primary outcome was the 14-day risk of a hospital visit with nervous system and/or psychiatric disorders, hypoglycemia, or a collagen-associated event. Secondary outcomes included a hospital visit with sepsis, retinal detachment or other tendinopathies, all-cause hospitalization, all-cause mortality, and sudden cardiac death. Inverse probability of treatment weighting on the propensity score was used to balance comparison groups on baseline health. Weighted risk ratios and risk differences were obtained using modified Poisson regression and binomial regression, respectively.ResultsOf 11 917 patients (median age, 83 years [IQR, 77-89 years]; 7438 women [62.4%]; median eGFR, 25 [IQR, 21-28] mL/min/1.73 m2) included in the analysis, 5482 (46.0%) received a higher-dose and 6435 (54.0%) received a lower-dose fluoroquinolone. After weighting, the primary composite outcome-a hospital visit with nervous system and/or psychiatric disorders, hypoglycemia, or a collagen-associated event-occurred in 68 of 5482 patients (1.2%) treated with a higher-dose fluoroquinolone and in 47 of 5516 (0.9%) treated with a lower-dose fluoroquinolone (weighted risk ratio, 1.45 [95% CI, 1.01-2.08]; weighted risk difference, 0.39% [95% CI, 0.01%-0.76%]). The risk of sepsis, retinal detachment, all-cause hospitalization, all-cause mortality, and sudden cardiac death did not differ significantly between groups.Conclusions and relevanceThese findings suggest that older patients with advanced CKD who were prescribed a fluoroquinolone at a higher-than-recommended dose were significantly more likely to experience the composite outcome of a hospital visit with nervous system and/or psychiatric disorders, hypoglycemia, or a collagen-associated event, although the absolute risk of these events was less than 2%.
| S-EPMC9346548 | biostudies-literature
Project description:BackgroundA comprehensive and accurate assessment of pain is critical for successful pain management. However, there is a lack of reliable and valid assessment tools for exploring multidimensional aspects of the chronic pain experience in culturally and linguistically diverse communities. This study investigates the reliability and validity of the Pictorial Representation of Illness and Self Measure + (PRISM+) for evaluating pain-related suffering and the sociocultural context of chronic pain within culturally and linguistically diverse patient cohorts.MethodThree prospective validation studies are reported for three culturally and linguistically diverse communities. Two hundred and fifty-one patients with chronic pain who self-identified as Assyrian (n =?85), Arabic (n =?83) or Vietnamese (n =?83) completed a PRISM+ assessment, alongside a battery of standardised pain assessments. To evaluate construct validity, the position of the 'pain' disk placement was correlated with the Brief Pain Inventory (BPI), Depression Anxiety and Stress Scale (DASS), and the Short-Form 36 Health Survey (SF-36). For content validity, thematic analysis of patient narratives accompanying each disk placement was conducted. Test-retest reliability of repeated 'pain' and five additional disks (PRISM+) values was analysed using intra-class correlation coefficients.ResultsThe PRISM pain assessment demonstrated moderate to good test-retest reliability for Arabic (ICC 0.76; 95% CI 0.65-0.84), Assyrian (ICC 0.65; 95% CI 0.50-0.76) and Vietnamese (ICC 0.82; 95% CI 0.73-0.88) patients. Moderate correlations between the PRISM 'pain' disk and sub-scores for the BPI, DASS and SF-36 were found (p <?0.001). Patient interpretations of the 'pain' disk aligned with accepted definitions of suffering, supporting content validity for PRISM. For the additional disks (PRISM+), moderate to good test-retest reliability (ICC 0.67-0.88) was observed and qualitative analysis highlighted each disk reflected social and cultural values.ConclusionThe PRISM demonstrates acceptable psychometric properties for measuring pain-related suffering for participants with chronic pain across three culturally and linguistically diverse communities. The use of additional disks (PRISM+) presents a reliable and valid option for exploring social and cultural dimensions of chronic pain in clinical encounters.
| S-EPMC6454629 | biostudies-literature
Project description:BACKGROUND:Smoking rates of Australians with severe mental illness (SMI) are disproportionately higher than the general population. Despite the rapid growth in mobile health (mHealth) apps, limited evidence exists to inform their design for SMI populations. OBJECTIVE:This study aimed to explore the feasibility, acceptability, and utility of adapting a novel smoking cessation app (Kick.it) to assist smokers with SMI to prevent smoking relapse and quit. METHODS:Using co-design, two in-depth interviews with 12 adult smokers and ex-smokers with SMI were conducted in this qualitative study. Stage 1 interviews explored participants' smoking-related experiences and perceptions of social support for smoking cessation, informed the development of the stage 2 interview schedule, and provided context for participants' responses to the second interview. Stage 2 interviews explored participants' perceptions of the feasibility, utility, and acceptability of the app features for SMI populations. RESULTS:People with SMI perceived mHealth interventions to support their quit smoking attempts as feasible, acceptable, and useful. Key emerging themes included personalization of the app to users' psychosocial needs, a caring app to mediate self-esteem and self-efficacy, an app that normalizes smoking relapse and multiple quit attempts, a strong focus on user experience to improve usability, and a social network to enhance social support for smoking cessation. CONCLUSIONS:This study gained an in-depth understanding of the lived experiences of smoking and quitting among people with SMI and their perception of the Kick.it app features to help inform the tailoring of the app. Specific program tailoring is required to assist them in navigating the complex interactions between mental illness and smoking in relation to their psychosocial well-being and capacity to quit. This study describes the adaptations required for the Kick.it app to meet the specific needs and preferences of people with SMI. Results of this study will guide the tailoring of the Kick.it app for SMI populations. The study findings can also inform a co-design process for the future development and design of smoking cessation apps for SMI populations.
| S-EPMC6754228 | biostudies-other
Project description:BackgroundConversations about goals, values and priorities with patients that are seriously ill are associated with improved palliative healthcare. The Serious Illness Care Program is a multi-component program that can facilitate more, better, and earlier conversations between clinicians and seriously ill patients. For successful and sustainable implementation of the Serious Illness Care Program, it is important to consider how stakeholders perceive it. The aim of our study was to explore physicians' perceptions and experiences of implementing the Serious Illness Care Program.MethodsData were collected through four focus group discussions with physicians (n = 14) working at a hospital where the Serious Illness Care program was in the process of being implemented. Data were analyzed with inductive thematic analysis.ResultsPhysicians' perceptions of the implementation encompassed three thematic areas: hovering between preparedness and unpreparedness, being impacted and being impactful, and picking pieces or embracing it at all.ConclusionsThis study identified key aspects related to the individual physician, the care team, the impact on the patient, and the organizational support that were perceived to influence the implementation and sustainable integration of the Serious Illness Care Program. Describing these aspects provides insight into how the Serious Illness Care Program is implemented in practice and indicates areas for future training and development.Trial registrationNot applicable.
| S-EPMC10717999 | biostudies-literature